Hold On!

“Hold My hand.”

Those are the first words to my devotion today from Jesus Calling. I stared at those words in awe; in awe of a generous, loving and wise God who gives us what we need right on time. And then it got even better. “I know every step of the journey ahead of you, all the way to heaven.” 

I know I sound like a broken record, but here I am again. The seizures haven’t stopped even with my brand name meds, which we had hoped would work. Most of the seizures have been small, short and manageable. I’m not sure at what point in my life I decided seizures were “manageable” when they are still happening, but that is where I am. It is not where I want to be. This past weekend I was in the grocery store. Hunter was with me while Justin kept the car and A/C running and I only needed a few necessities. In a matter of seconds I realized that something was off. I wanted to get to the car, and fast because this off was no good. Hunter pushed the buggy in front of me towards the door. I called for him to wait. He thought I forgot the bread. I wish I had just forgotten the bread. I stopped, grabbed the counter and held on. The world around me began shaking violently and I tried with all my might to focus on a sign. When I couldn’t, I knew this was going down now and this was going to be bad. I screamed “I need help!” An angel who was checking out near me turned and asked what was wrong. As I felt my knees begin to buckle beneath me I said “I’m going to have a seizure.” I asked her to help me get down on the ground and she gently guided me to the floor, slipping my shoes off and repeating “you are ok.” All I knew was I wanted down on the ground before the seizure took me down. As I have told people before it is all about saving the head!

The next few minutes were chaos. I could feel someone behind me keeping me upright, people were asking who knew me, store employees were yelling to call the ambulance and my angel customer was trying to find her reading glasses to make out the phone number on my medic bracelet. I was frozen, well not really, I was convulsing, but I was frozen, watching my 11 year old holding onto the buggy for dear life and trying to explain that his mom has epilepsy, his brother was in the car and calling out Johnny’s phone number all at the same time. As I watched my body, completely out of control and my son, now forced to be in control my heart broke. This was so NOT ok! Hunter rushed to get Justin. Like a man he calmly appeared, grabbing me and looking me right in the eyes repeating that it would be ok. He told the store manager I didn’t need an ambulance and he could handle it. My angel customer remained by our sides. Finally the seizing stopped and my tears and confusion started. Oh this scene… way too familiar and now far too often. My same angel took Hunter and loaded the groceries into the car and left Justin with me. As I sat on the floor, shoes off, between the customer service desk and the checkout line I wondered what people must think and how in the world did all of this happen? How in the world did the last nine years happen?

This sucks. I have no other words for it. Not being able to be the person I want to be, not being able to do what I want to do; it all sucks. That sums it up.

When we got back in the car I was able to talk to Johnny on the phone. With his voice of reason and strength, he told me we had tried every resource we had and it was time to call the doctor and push forward. So this is where I am, on this path with really no options. So we push forward. On September 8th, I will be admitted to the Epilepsy Unit at Duke. They will take me off all my meds and hook me up to machines and monitors and we will wait for me to have enough seizures that the doctors can identify the part of my brain that is causing the problem. Someone will have to stay with me all day and night and I won’t be able to leave the room. This is our last resort. That means this is our last option, not a Resort where we look forward to staying.

I did not want to do this. I have fought this option for months. Who actually asks to have seizures? No meds? Are you kidding me? I know I will be safe and it could lead to answers but the emotional and physical strain seems unbearable to me.

Then I opened my devotional and it said “Hold My hand.” Huh, sort of profound. “I will guide you carefully along today’s journey. Don’t worry about what is around the next bend. Just concentrate on enjoying My Presence and staying in step with Me.” Well now, straight up, I do NOT want to be out of step with God. Though when I get to heaven I want to know why He didn’t make my steps a little more sturdy, but I want to be in step! This weekend, just hours before my seizure our Youth Pastor said something so simple yet so huge it took my breath away. He reminded us of the saying we repeat that God will only give you what you can handle. He told us that was as false as it gets. He told us that God gives us what we need so that we continually look to Him and put all of our faith and our trust in Him. Holy guacamole Batman! I never ever thought about that. Yes, God will constantly guide us to put more faith and more trust in Him. This isn’t a test, He is just reminding me that He is God. He is in control, and I must relinquish control to Him. He has got this and He has had it all along AND He knows what is around the bend. Take His hand and follow.

I’m scared, don’t misunderstand. I do not want to do this, but this is the path God has set me on and He will not leave me. I never know what this blog is really accomplishing. Am I shedding light on this unseen, sorely underfunded and misunderstood disorder or is it a source for me to compile my thoughts in an organized way so that I can see God’s hand at work? I hope it accomplishes both. It is a way for me to reach beyond my walls that continue to close in on me and speak to a world about what millions of us experience everyday. I’m scared and I know everyone reading this has experienced fear and survived it. You give me strength to face tomorrow.

I covet your prayers, I covet your generosity and I covet your love…for all of us. Know that my faith in this process begins with my faith in My HUGE God. I’m putting that in print, so please remind me, when I question, when I cry and when I fail to look to Him to see me through, please remind me that He is holding my hand. I AM holding onto Him and this will be ok.

As a side note, we will be welcoming help with some logistics… transportation and meals, while I am at Duke. More on that to come. I thank you in advance for your help!

Copyright © Gatewood Campbell, August 2015

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Here We Go Again, with a Little Less Energy but a Little More Hope

No one told me there is no quick fix. Why don’t they tell you that? I have never been much of a patient person. Don’t ask when I can drive again. I quit counting. I really don’t know. There is still no cure for this cursed thing called epilepsy. This morning I read about a child in Charlotte who is literally dying from her seizures, having tried 19 medicines a day and nothing is helping. When is enough enough for someone to realize this is serious stuff? People are suffering! Epilepsy is serious business and it changes people’s lives every single day.

I’ve been on a new path for several months now. I’m seeing a new specialist at Duke, thanks to the handiwork of my Mom. I had some tests done that showed I was normal…or something like that. Who says that to someone with epilepsy? So in lieu of further lengthy and highly unappealing testing I opted to change meds again. Frankly, I’m a wimp and the medicine seemed easier. I figured after a dirty dozen what’s with another one, right? The doctor said if things are going ok and this is the person we know then we can keep things the same. With resounding force I’m fairly certain Johnny, my Mother and I nearly knocked him over when we said “No, this medicine is not OK.” I will admit, I knew it was bad but when I saw Mom and Johnny look at the doctor and tell him this is not the person we know, it made me so mad that this disorder continues to rob me of so much. And it robs me of things that I don’t even realize! Johnny will say that I’m repeating myself, but I’m certain I’m not, so I have to continue my point because I haven’t made it yet, so I continue repeating myself, and he continues telling me I’m repeating myself…thus the rinse and repeat cycle goes on endlessly. For those that know me well, you can picture me rolling my eyes here right?

So, here we are, one week into a five week cycle of changing meds. The promising thing is that I am moving to a BRAND name med. No more generic crap. We are going for gold here. We read through all my records and in the past, this medicine worked. Granted it was pre-40, so it could be different, but it is promising. It only seemed to stop working when we moved to generic. Lesson #123 at the pharmacy, always double check your prescription because they don’t always fill what the doctor writes. “Thanks, actually the doctor wrote that for the brand name NOT the generic, I’ll wait while you fill it as written.” Lesson #124 if you have a weird name they always remember you at the pharmacy and sometimes that isn’t good. Lesson #125 looking for a new pharmacy.

I’m glad to be going off the medicine that is widely known to turn you into a dope head. I simply forgot that I was going onto a medicine that keeps you in a fog for the 12 hours that you are able to stay awake during the day. I’m thankful for the internet world of epilepsy families that are always available to give advice to fight the side effects that come along with this. They have been through everything before and know what is around every corner and are so helpful with every question no matter how crazy! No one prepares you for this. If I can find a beekeeper with caffeine infused honey I think I kill two birds with one stone!

I dreamed the other night that I snuck out and took the car out and went shopping. I don’t think I even bought anything. I just went where ever I wanted. People are so gracious to offer. It isn’t about needing to go somewhere, it is about the ability to go somewhere, gripping the steering wheel in my hand. Grabbing the gear shift and throwing it into drive and knowing where I’m going without telling someone, planning it out days in advance, working out the timing and having it take four times as long as it normally would. For us, it is about maintaining some level of control in our lives. That is why driving is such a huge issue…because everything else feels so out of our control.

My patience was left somewhere, maybe on a sidewalk, a bus, or an emergency room. I think I have lost my sense of humor… perhaps this week when the boys dropped me off at Target to grab four, only four things and we ended up with a dead battery in the car. Really, I should know better. We all just shook our heads at that because we did know better. We should have gone to Walmart. I’m trying to keep my family fed, keep our house clean and keep them in clean clothes. I’m trying to make sure they get where they need to be and with the constant help of some dedicated friends that is happening. The kids are not missing out and that is the most important thing to me. I’m so SO thankful for that!

The bonds of my friendships have become priceless. There are people that I depend on when I am at my limit and need to vent because I can’t take one more minute of the unexpected. They will listen to me cry, they will carpool me around town or if Justin is at work, Johnny is sick and Hunter has to be at ball practice, these friends will drop what they are doing and come to my rescue. When Mom was in chemo and I couldn’t get to Mom, they helped make sure Mom was ok. They have been in this journey for years now. They didn’t quit on us. Recently we lost a very special friend. He was dedicated to our entire family, four generations! That presence will never be filled. His laughter will never be replaced by another soul. What he leaves is a legacy with which we learn; spread ourselves and share ourselves. Give what we can of ourselves. Be open to listening. Be open to seeing what is around you and be open to helping those around you. He invested in four generations of my family and his impact is deep rooted. This is the kind of friendship that makes me smile, and makes me shed a tear or two. Did he tell me there was no quick fix and I missed that?

Copyright © Gatewood Campbell, April 2015

Sometimes the Glass Really is Half Empty

I try, I really try to see every glass as half full, not half empty. A glass is round and when it is hit by something it bounces off in a completely different direction. It can’t be hit by the exact same thing in the exact same spot. So when I look at life as a glass half full, it is headed towards overflowing and by design it can not be penetrated. This keeps me moving forward, pressing on, determined not to be depleted or shattered.

But sometimes the water is full of air, full of bubbles that make it too cloudy to see through. Or the glass isn’t transparent so who would know if it really is half full or half empty? The glass can seem square shaped, making every pot shot bounce off and hit in the same spot repeatedly until it is broken. With a square glass holding cloudy water what do you do? If the glass isn’t transparent, you can’t press on enough to see through the glass, the battle is lost before it has begun.

Your normal is not my normal, or anyone else’s normal. Everyone has something unique that makes the definition of normal itself, unique. We each have something to conquer each day, something that has the ability and weight to sink us to depths that would drag a bobber to the bottom of the lake.

I have learned, well I am still learning, to live with epilepsy and a brain injury each day. I often wonder if it were just a brain injury, how would life be different? If it were just epilepsy, how would that be different? If my already injured brain weren’t dependent on medicine to limit seizures, what would be different? If I never had to go to Target that winter day in 2005, how would my life be different? Now, I know and I can list off in excess, the ways that my life has been enriched because of my circumstances. I will never ever deny the tremendous value of the experiences I have had or that my family has had due to my injuries. That walk in Target shaped my family into who we are today. There is much for which I am grateful and that enables me to see the glass half full.

Sometimes though, I just need to allow myself time to acknowledge there are consequences of my fall that just plain suck. I have yet to find a medicine, and I have certainly tried my fair share, that doesn’t have some side effect that over time becomes intolerable, either for me or for my family. I hate that I hate when the phone rings, because every nerve in my body flinches with fear because I’m about to be forced into a conversation that I did not initiate. I will be forced to try to decode my misfiring brain into words that may or may not communicate correctly. I will be asked questions that I need time to understand and to answer, yet the caller will expect quick responses, because that’s how a normal person responds. I hate that I cannot initiate a conversation of much merit because my brain is just a blank canvas without even a paintbrush. I enjoy watching my family laugh and scream on roller coasters, but I get tired of just walking from ride to ride and sitting at the end of the off ramp because I can’t ride with them. My family loves to watch a brilliant fireworks show, but I get bored holding my chin to my chest with my eyes closed. It’s frustrating to look in my closet and not understand how to put together a snazzy outfit that matches. (I’m so glad I have boys that aren’t dependent on female advice about fashion…I can not fathom the disastrous outfits that I would have put together for a girl.) It’s embarrassing to look at a teenage cashier and have to walk away leaving all my groceries on the conveyer belt because I’m confused by the sale price or the coupon or just the small talk they are genuinely trying to make with me. I feel horrible guilt when the boys’ teachers ask for volunteers and I don’t respond. I imagine them thinking “she doesn’t work, so she should have her hiney helping somewhere”. It’s embarrassing when I can’t understand the directions a 3rd grade teacher is giving for a game. It only gets worse when the kids try to explain and I still don’t understand. And my confidence hits rock bottom when the teacher tells the group of kids their leader has misguided them. When my son looks at his classmate and explains “she just doesn’t understand”, the fishing bobber has joined me at rock bottom. It’s humiliating to have to say no. I can not begin to put words to the demeaning feelings that overwhelm me when I have to say no to volunteering at my church. I, of all people know the need for volunteers and I should be first in line with a hand raised, but I can’t, I simply can’t. I know the need, but my role is as a seat filler now.

**Hold that thought….my phone alarm has just alerted me that it is time for a dose of medicine. If I hit snooze I may not remember to take my medicine later. I would like to continue with my train of thought, yet I am forced to stop….with a body dependent on a consistent dosing of medication that allows me to live my kind of normal. I can only hope to remember where I was in thought.**

Ok, I hope can resume regular programming now…

I share these things not because I am seeking sympathy. I don’t need sympathy because I know without a doubt that I have blessings that continually overflow. I share these things because sometimes I need to allow myself to vent and admit that there are some things that just suck. I have adapted. My entire family has adapted. That doesn’t mean that I have to like it all the time. My square glass has been leaking slowly for some time now. Maybe it finally shattered from relentless pot shots and the cloudy water has soaked my fingers and toes.

This season will pass and I will more fully accept and adapt to whatever circumstances come my way. The good news is that when a glass breaks, it is thrown away and replaced with a new one. We refill it with crystal clear water and the glass remains half full.

© Gatewood Campbell, August 2013